March 2011 
        
   Focus on IBC 
IBC RESEARCH FOUNDATION NEWSLETTER  
 
AMELIA PROJECT
Giving Wings to Research
  By, Ginny Mason, RN, BSN
    Executive Director, ibcRF

February 26, 2011, breast cancer clinicians, researchers, students, and advocates from across the state of Indiana gathered at University Place Conference Center, on the Indianapolis campus of Indiana University to learn, share ideas, and network.

 

The Amelia Project, Giving Wings to Research, got its start in 1998 thanks to a group of consumers who wanted to be involved in and facilitate breast cancer research in Indiana.  Bringing together clinicians, scientists, and consumers was a way to escalate research and form important partnerships.  "The program brings senior and junior scientists, clinical investigators, and students from six different Indiana universities and colleges together on a neutral field under the consumer umbrella."

 

The program was initially sponsored by the Catherine Peachey Fund and the Central Indiana Affiliate of Susan G. Komen for the Cure but is now under the Department of Continuing Education at the IU School of Medicine allowing them to offer continuing medical education credits for those attending.  Educational grants in support of the meeting come from The Catherine Peachy Fund, ImClone Systems, and Susan G. Komen for the Cure of Central Indiana.

 

The Amelia Project is unique, bringing world-class science to a small, informal meeting, offered free to all attendees.  Each year a keynote speaker focuses on a cutting edge topic in the field of breast cancer research.  Additional presentations by Indiana based members of the breast cancer community and poster sessions which highlight the work of students, add to the diversity of the meeting.  The poster session is held following the sit-down lunch allowing attendees to mingle, meet new people and talk with the poster presenters.

 

George W. Sledge, Jr., M.D.
Dr. George Sledge

Dr. George W. Sledge, Jr, program chair, current ASCO (American Society of Clinical Oncology) President and member of the Inflammatory Breast Cancer Research Foundation Medical Advisory Board, provided opening remarks and introduced each speaker throughout the program.  Dr. Sledge, a nationally recognized pioneer in the development of novel therapies for breast cancer, received the 2010 William L. McGuire Memorial Lecture Award at the 33rd Annual CTRC-AACR San Antonio Breast Cancer Symposium.  He is Ballve-Lantero Professor in the IU School of Medicine and Co-leader of the Breast Cancer Program at the Indiana University Simon Cancer Center.

 

This year's keynote was provided by Patricia S. Steeg, Ph.D, Chief, Women's Cancers Section, Laboratory of Molecular Pharmacology Center for Cancer Research, at the National Cancer Institute.  Dr. Steeg's talk, "Metastasis Suppressors Come of Age" kept the audience's full attention even in the post-lunch time slot!  For over 20 years Dr. Steeg has been studying the mechanism of tumor and metastasis suppression, having identified Nm 23 through work in her lab.  There are "20-some identified metastasis suppressor genes" that have now been identified, according to Dr. Steeg.  Dr. Steeg has plans to take her current work further in the lab, with a compound that may serve to inhibit metastasis.  Needless to say this would be an important development for those dealing with breast cancer since most deaths occur from metastatic disease.

 

Other presentations at this year's meeting were "MicroRNAs of Mammary Epithelia in Body Fluids" by Dominik M. Duelli, Ph.D. of Roselyn Franklin Institute Chicago; "Tumor Micro Environment" by Tracy Vargo-Gogola, Ph.D. of Notre Dame and IU School of Medicine; and "Breast Cancer Prevention Research: A Global Effort" by Sophie A. Lelievre, DVM, LLM Public Health, Ph.D. of Purdue University.

 

Two additional presentations were of particular interest to those of us in the advocacy community.  First was a talk "The Normal, Healthy Human Breast: What the Komen Tissue Bank has Learned So Far" by Dr. Susan Clare of the IU School of Medicine.  Dr. Clare, along with others, has been collecting breast core biopsies, blood, sputum and medical histories of women without breast cancer and banking these items for research purposes.  For over a decade the breast cancer research community spoke about the value of studying normal breast tissue but this is the first large biorepository of samples from women without a history of breast cancer that is available to the research community.  Dr. Clare and colleagues have learned exciting things about the plasticity of mammary stem cells (also called progenitor cells) that will aid the further understanding of normal breast tissue development and the changes involved in the development of cancer.

 

The second presentation that surprised many of us was titled, "Equipoise Lost: Ethics, Costs, and the Regulation of Cancer Clinical Research" by David Steward, MD of MD Anderson Cancer Center.  As Dr. Stewart breezed through a large number of slides at breakneck speed, he managed to highlight many of the flaws in our current system of drug development.  He pointed out that "large randomized trials: aim low, use large patient numbers to 'overpower' heterogeneity, draw wrong conclusions re: which therapy is 'better', and miss advances in small subgroups," stressing that large randomized trials in unselected patients are extraordinarily wasteful.  Dr. Stewart used a series of simulations and examples to show how using targeted therapies in a selected sub-population of patients would move new therapies to market more quickly and safely than our current system.  While not everyone was ready to adopt all Dr. Stewart's ideas, many in the audience voiced the need for a major shift in how clinical trials are conducted and a restructuring of the regulatory system to bring quality clinical options to patients.

 

Attending this year's Amelia Project meeting representing the Inflammatory Breast Cancer Research Foundation were Ginny Mason, Executive Director and Board member, Gayla Little and her husband Michael Little.


CORRECTION . . . 

 

In last month's lead article on the Love Army of Women I wrote, "As of mid-January, 2011, there are over 34,000 "volunteers in the Army."  I apologize for missing a zero in that number!  Thanks to Ms. Jalon, Community Outreach Manager for the Love/Avon Army of Women who set the record straight with her correction below. 

"Actually, there are close to 350,000 members of the AOW to date, with over 44,000 having been able to participate in a study so far." 

Our apologies to the Love/Avon Army of Women.  Congratulations on the great work.

Ginny Mason, RN, BSN    Executive Director, ibcRF

C4YW 

 

By, Carol McWilliams

ibcRF Volunteer

The Conference for Young Women Affected by Breast Cancer was held February 25-27 in Orlando, Florida. Created by Living Beyond Breast Cancer and Young Survival Coalition, the conference addresses issues of young women affected by breast cancer, and those who support them. The Inflammatory Breast Cancer Research Foundation had an exhibit booth at the conference again this year.

The amazing IBC women I met kept me energized and excited about the experiences they shared.  All told, there were sixteen IBCers at the conference! That was a huge surprise. IBC friend Krysti Hughett was there representing the Young Survival Coalition, and Amanda Nixon for the Keep-a-Breast Foundation. Big group hug!!

IBCer Kelly Kruger posted a note on the message board asking any IBCers to stop by the booth. Several people stopped by to tell me that a friend or relative was an IBC survivor or pathfinder. One young woman from Baltimore, still in treatment for stage 4 diagnosis, sat and talked with me for quite awhile saying she had never met anyone with IBC much less a survivor. We both had tears in our eyes.

Kimberly Blackwell, M.D., an Associate Professor of Medicine and Assistant Professor of Radiation Oncology at Duke University in Durham, North Carolina, presented a session on Inflammatory Breast Cancer; the second time this topic had been addressed by the conference planning committee. Dr. Blackwell mentioned the important work done by the Inflammatory Breast Cancer Research Foundation and Ginny Mason, Executive Director, several times. Nine IBCers got together for a casual dinner after the IBC session and shared our stories, and many turned up to rock the DJ's music at the Dance & Dessert later that evening.

Five IBCers have requested more information about the Inflammatory Breast Cancer Research Foundation BioBank & Clinical Data Base and were very interested to hear about this unique resource for researchers. It was an honor to be asked to staff the Inflammatory Breast Cancer Research Foundation booth at this amazing conference.

Upcoming Events


March 17 - Frankly Speaking: Sex After Breast Cancer; Teleconference, noon-1:15 EDT. Click here.

  

March 28-29 - 4th Annual Biospecimen Research Network (BRN) Symposium: Advancing Cancer Research Through Biospecimen Science; Bethesda, MD Click here.

 

April 2-6 - American Association for Cancer Research (AACR) Annual Meeting; Orlando, FL Click here.

 

April 12 - Triple Negative Breast Cancer: Medical Update; Teleconference, noon-1:15 pm EDT. Click here.

 

April 12 - FDA Oncologic Drug Advisory Committee; Silver Spring, MD. Click here.

 

April 26 - Triple Negative Breast Cancer: Fear of Recurrence, Teleconference noon-1:15 pm EDT. Click here.

 

April 28-May 1 - Oncology Nursing Society: 36th Annual Congress; Boston, MA. Click here.

 

April 30-May 3 - NBCC Annual Advocacy Training Conference; Crystal City, VA. Click here. 

 

April 30-May 1 - Metastatic Breast Cancer: Enhancing Your Health and Quality of Life; Loews Philadelphia Hotel. Click here.  

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Immortal Life of Henrietta LacksThe Immortal Life of

Henrietta Lacks

  

           A Book Review By, Ginny Mason, RN, BSN 

     Executive Director, ibcRF 

 

Is the name Henrietta Lacks familiar to you?  If not, you're not alone.  Most people in the cancer advocacy community have never heard of her.  However, you might have come across a reference to HeLa cells being used in various research projects.  There are more than 60,000 scientific studies published using HeLa cells, with nearly 10 more being published every day. 

Henrietta Lacks grew up in the tobacco fields of Virginia, working the same ground her slave ancestors had before her.  When Henrietta developed worrisome symptoms, she eventually confided in a friend but put off seeking medical attention.  When she was so miserable she just couldn't stand it any longer she finally sought medical attention.  She ended up at the only place she thought would take her, a "colored" clinic at Johns Hopkins Hospital where patients like Henrietta could receive medical care.   

Eventually Henrietta received the diagnosis of cervical cancer and throughout the diagnosis and treatment of her disease, cells were taken for study, without her knowledge.  Those vigorous cells, still growing and being used today, have been responsible for some important medical discoveries such as developing the polio vaccine, pivotal viral studies, and even gene mapping.  Unfortunately, Henrietta died in 1951, never knowing the contribution she made to science.  She was just 31 years old and left 5 children, most who barely knew her. 

In spite of her amazing contribution to medical research, few people have ever heard of Henrietta Lacks and it has only been recently that her story has come to light, thanks to Memphis author Rebecca Skloot. 

Ms. Skloot became fascinated when she learned of Henrietta Lacks as a graduate student in 1999 and went in search of the story behind HeLa.  Searching out members of the Lacks family, scouring the area around Clover, Virginia to find anyone who remembered Henrietta and eventually ending up in Baltimore, Ms. Skloot's quest was filled with unexpected twists and turns.  Through the pages of the book readers are introduced to the concept of medical ethics and how the Lacks family feels they've been cheated by the entire medical establishment, especially Johns Hopkins, because people have profited from Henrietta's cells.  While others have become rich because of HeLa, Henrietta's family has struggled financially and physically.  Ms. Skloot worked tirelessly to help the Lacks family come to an understanding of the great gift Henrietta gave, although unknowingly, and put to rest concerns they had about their mother still 'being alive' since the cells continue to reproduce and be used in research. 

Much has changed since 1951 but the lines are still blurred when it comes to informed consent and the use and ownership of tissue.  Courts have deemed that tissue removed from the body is medical waste and patients have no right to say what happens to it.  Human tissue is essential for study, especially in an era of personalized medicine, but the interests of the patient must be protected.  Advocates can play an important role in educating the public about the importance of tissue for research while also stressing ethical behavior on the part of the research community. 

For an interesting trip into the sometimes murky world of medical ethics and a history of cellular research, check out your local library or book store for a copy of The Immortal Life of Henrietta Lacks by Rebecca Skloot. 

   http://rebeccaskloot.com/the-immortal-life/

ANNUAL ADVOCACY TRAINING CONFERENCE  

 

April 30 - May 3, 2011, the National Breast Cancer Coalition (NBCC) will offer their Annual Advocacy Training Conference at the Hyatt Regency Crystal City in Arlington, VA.  For those not familiar with this conference, it is an outstanding opportunity to network and learn important skills needed for effective work in the breast cancer advocacy community.

This year's conference will highlight the Breast Cancer Deadline 2020 � an initiative that "focuses on how to stop breast cancer metastasis from taking women's lives and how to prevent the disease from developing in the first place."  At the conference you will learn:

  • Critical thinking skills around breast cancer science and research.
  • How to change systems towards ending breast cancer by 2020.
  • Tools to recruit additional support for Breast Cancer Deadline 2020 �

A limited number of scholarships are available for the conference.  Scholarships are only given to NBCC members, so if you're interested; become a member or renew your membership right away! (Scholarships can cover hotel costs for up to three nights in a shared room, most meals, plus conference registration.)  Whether you're a first time attendee or returning advocate, there's something for everyone at this conference.  Outstanding workshops, plenary sessions with noted speakers, and time to visit and mingle with other advocates; you'll find all this and more packed into the three days.  Of note is the Sunday workshop, "Tissue Bank Issues: A Tool for Maximizing Research in Breast Cancer?"  Susan Clare, MD of Indiana University will be the speaker and ibcRF's Ginny Mason will moderate the session.

For many, the chance to be involved in political action is the drawing card for this conference.  Lobby Day on Tuesday, May 3, allows advocates to put their training into action during visits to Members of Congress, urging them to support NBCC's legislative priorities.

If you're attending the conference, watch the email discussion list for information on an IBC get together during down-time at the conference.  It's a great opportunity to put faces with names and share with one another.

 

Click here for more information on the conference, program, scholarships, and more.

Rare Disease Day

  

Rare Disease Day was established in 2008 to raise awareness about rare diseases, which together impact millions of people worldwide. It also highlights the importance of research to develop diagnostics and treatments to address unmet medical needs.  On February 28, 2011, FDA joined the National Institutes of Health (NIH) to commemorate the 4th International Rare Disease Day with a day-long program to highlight the various rare disease research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, the NIH Institutes and Centers, the Health Resources and Services Administration (HRSA), the Food & Drug Administration's Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance. 

 

The FDA plays an important role in granting orphan designations and marketing approvals for drugs, biologics, and medical devices to treat rare diseases, which are diseases or conditions that affect fewer than 200,000 people in the United States. The number of people to be treated are usually deemed too small to create profit incentives for drug developers to conduct costly research. 

 

OOPD grants orphan drug designation to qualified products and administers a clinical trials grant program to encourage development of treatments for orphan diseases. Priority reviews and accelerated approvals of marketing applications also help speed needed treatments to market.  The Humanitarian Use Device (HUD) and Humanitarian Device Exemption (HDE) marketing pathway creates an alternative pathway for getting market approval for medical devices that may help people with rare diseases or conditions. 

 

As countries combine their efforts to put the spotlight on "Rare Diseases and Health Inequalities," FDA continues to collaborate with international regulatory agencies to address unmet medical needs of patients with rare diseases globally.  OOPD and EMA work together regularly and have a common application for orphan product designation.  (See EMA activities for Rare Disease Day www.ema.europa.eu

 

FDA has a long standing patient representative program that brings patients' voices, including those with rare diseases, into the drug development and review process.  And in February 2010, FDA created a new position of Associate Director for Rare Diseases in the Center for Drug Evaluation and Research (CDER) to assist stakeholders and developers of drug and biologic products in navigating the complex regulatory requirements for bringing safe and effective treatments to patients.

 

In recognition of Rare Disease Day, FDA will launch a new set of web pages at www.fda.gov which will include the personal stories of individuals with rare diseases, giving these patients a greater voice.  Links from the page will provide additional information about the offices and programs within FDA that help address the unmet medical needs of patients with rare diseases.

 

For more information about FDA's patient-related activities, including the Patient Representative Program, visit FDA's web pages for Patients and Patient Advocates

 

(from FDA Patient Representative Program)